The Devastation that Led to Gratitude

Photo taken shortly after my diagnosis.
You can see one of my Lupus-related rashes.

I was recently interviewed for a Lupus advocacy video* by Lupus LA. At one point, the interviewer asked me how my life was "devastated" by the diagnosis. I feel like I sort of stumbled through my answer because I had never actually used that word--"devastated" to describe my diagnosis. I did try to give examples, but I also admitted that I felt relieved by the diagnosis because I had been dealing with mysterious symptoms for about two decades before I was properly diagnosed. I told her it was a relief to finally have confirmation that I wasn't crazy, that it wasn't all in my head or the product of stress or depression, that things were not "normal" as the blood tests kept indicating.

I have had time to reflect since the interview, and I can say that Lupus and its symptoms have devastated my life in many ways and that the diagnosis itself has definitely caused an upheaval in my life. For now, I'll write about the devastation that led to my diagnosis and talk about my life post-diagnosis in another post.

The first possibly Lupus-related symptoms I remember started when I was a teenager. I was extremely tired a lot of the time and my mother kept asking the doctor to run tests for anemia. He ran those as well as tests for my thyroid, but things always came back normal.  When I was 15, I had a period that wouldn't go away. My doctor finally had to give me drugs to make it stop, followed by putting me on the pill to keep me regulated. I also remember having a lot of joint pain. I could totally predict when it was going to rain. I just assumed it was growing pains. Whenever I caught a cold, it would take a long time to go away. With one such cold, it took so long, I was eventually hospitalized for "possible pneumonia".

When I started college I had a hand tremor that was so bad I was taking notes one day during a lecture and my pen went flying into my friend's face. My mother took me to a neurologist. The neurologist sent me in for a CT Scan. They found nothing. The neurologist said he had no idea why my hand shook the way it did.  "Maybe it's stress," he said. This is my first memory of what would become a medical mantra for the various doctors that saw me.

During my time in college, I dealt with constant fatigue. Whenever anyone asked me how I was doing, I always replied, "I'm tired". I got nicknamed, "Tortuga" (Spanish for tortoise), because I was slow-moving, slow-talking, and always trying to take naps at work. One day I was so tired, I took a nap outside on a set of stairs--vertically! Like, I actually laid vertically across several stairs so that people could walk past me while I slept. That's how tired I was.  So, I went to more doctors. "Maybe you're hypoglycemic," they'd say. Then the blood tests would come back normal. "Maybe it's stress."

As I progressed into my 20s and 30s, more symptoms started to develop: Irritable Bowel Syndrome, hair loss, dizziness, rapid heart palpitations, eye twitching, night sweats. In my early 30s, when I was living in Spain, I began to develop a pattern of becoming really sick during the summer. I would get sick to my stomach every first week of July, when it is hottest, and I always got the flu shortly after. Little did I know at the time that the sunlight was making me sick. When I returned to the U.S in 2008, I continued to have all of these symptoms, but now I was uninsured due to all of my "pre-existing conditions". So I would just deal with them and pray that I wouldn't end up in the E.R..

In 2014, I finally got access to healthcare thanks to the Affordable Care Act and it was just in the nick of time. This was the year leading up to my diagnosis and it was by far the most devastating. My hair was falling out at a faster pace. I started developing rashes across my face and back. I gained a lot of weight that felt more like inflammation than actual fat. My right eyelid got infected and swelled for six months, even after the infection was supposedly gone. I continued to have more and more night sweats and palpitations. My skin started to hurt when I was showering. I started having more dizzy spells. I developed regular migraines, joint pain and swelling, deep muscle aches, and sharp muscle spasms. The knots in my back were so tight, massage therapists always seemed surprised. I also started to notice things that seemed neurological. I would mix up words or names and knew I was mixing them up, but couldn't correct it. I would suddenly lose grip on a water glass. I couldn't perform Flamenco steps that I had been doing for years. I couldn't remember choreography from one moment to the next. My inability to remember choreography helped get me fired from a dance job. I used to have an amazing memory. I couldn't understand what had happened.

And then the weirdest of all my symptoms started happening. I began having nightmares that were so bad, I was terrified of my bedroom. I began to think something was haunting me or trying to get me. I have since learned about the many ways Lupus can affect the brain and given that my nightmares have slowly gone away the longer I've been in treatment for Lupus, I'm convinced that the nightmares and my belief that they were real, were symptoms of the disease. Again I went to the doctor, again I was told that everything looked normal and maybe it was stress. My husband had just started a job in Africa and I was alone a lot of the time, so the doctor and others around me were convinced that this was what was wrong with me. I conceded, but I didn't believe it. I was especially convinced it wasn't in my head when one Thursday night, I projectile-vomited after two bites of my dinner while watching the movie, "Under the Tuscan Sun". I was actually enjoying the film, so I knew it wasn't to blame. Next thing I know, I ended up in bed for an entire weekend, with stabbing pains in my chest, stomach, and legs. And yet, although I should have gone to the E.R., I didn't want to go to be told, "Everything's normal. Maybe it's stress" and risk getting slammed with an expensive bill for nothing. Instead, I texted my brother and his wife to say, "I think there's something seriously wrong with me." They were living in Vegas, so there wasn't anything they could do other than bear witness.

Things didn't turn around for me until one day, I lost my ability to empty my bladder. It felt like I had to go all the time and was often in pain. My doctor referred me to a urologist. After ordering what ended up being a very painful bladder scan, my urologist referred me to a Physical Therapist (DPT). The DPT diagnosed me with Pelvic Floor Dysfunction. I began getting weekly Physical Therapy and got some relief, but I wasn't healing as quickly as I should. Meanwhile, my other symptoms continued, and now I could add crazy cystic acne, and severely inflamed gums that also wouldn't heal with treatment. I ended up having gum surgery. I went back to my doctor. "Look at me. You can't look at me and tell me that this is normal. There must be some other test you can run," I pleaded. "I have an idea," he sympathetically replied and he ran some more blood work, but didn't tell me what he was looking for.

A week later I went to his office. "Well, I think we found something." That's where I first felt that wave of relief I talked about before. After the years of being told this nightmare was in my head, there was physical proof that I was not crazy or just "stressed". "I think you have Lupus." It happened to be Lupus Awareness Month and he had gotten the idea to run the right tests because he had just seen a diagnosed patient who had the same "butterfly rash" I had on my face. "I don't know enough about it," he admitted, "so I want you to go see this rheumatologist and take these results with you." Three weeks later, I met my rheumatologist, and she said the magic words I can still hear, "I'm going to run my own blood work because it needs to be done, but I can tell you right now just from looking at you that you have Lupus. Don't worry, we're gonna take care of you." It still brings tears to my eyes. I felt scared at what this meant for the rest of my life, but more than anything, I was so grateful.

So yes, Lupus has led to a lot of devastation in my life, but when I meditate on my experience, I realize I learned a very valuable lesson that I want to share with you. You absolutely MUST advocate for yourself. If you consistently feel unwell, if you are in pain, if you have inexplicable symptoms, find a healthcare practitioner who is willing to work with you to get to the root of the problem. I'll concede that sometimes "stress" may actually be the reason something is happening, but you will have a gut feeling whether this is accurate. Listen to your gut. If your gut tells you that "stress" is not the answer, keep looking and find someone who'll look with you. You know, I almost didn't get that last round of blood work done. I was supposed to get blood work done by my urologist for something different that he was interested in looking for. He wanted me to wait until he was back from his vacation. My gut told me not to wait, to go to my doctor, and beg him to look for something new. If I hadn't listened to my gut, I might still be wondering what is wrong with me. And by now, I would probably be even sicker than I ever was. I'm doing better now because I'm actually being properly treated. So please, please advocate for yourself and if you're shy about it, take a vocal friend with you to your appointments.

I cannot fully express how grateful I am that I listened to my gut and advocated for myself, and after so many years of devastation, I am truly grateful for the diagnosis.

* I'll post the video once it's available.

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